Questions about my protocol experience

I'm a first time poster (loooong time lurker). I tried to find the answers to my questions in all the literature and previous posts first, but was unsuccessful.

I'm two weeks into the protocol (this is the second time, first began it two years ago, but abandoned it due to (what I perceived to be) detox that I couldn't handle and an uncooperative Dr.) I'm scheduled for my urinalysis and all the other lab word in two months, but I was wondering if a couple of my symptoms might suggest increased ammonia and if I should contact my nurse practitioner about doing the urinalysis earlier.

This may be nothing at all, but I just want to be careful. Two weeks in and, in addition to all the classic symptoms (feeling fluish, frontal headaches that respond well to molybdenum, swollen lymph nodes, slightly stuffy nose), I am still having problems with constipation as well as poor sleep and night time anxiety with no decrease in severity since I began (while my other symptoms have decreased in severity). While I know some people had disturbed sleep in the beginning, I got the impression that that waned away for most people after a few days.

Am I too early into the protocol for this to cause worry? Could this just be my individual reaction to the protocol, or should I seek to get my lab work done earlier in case there is an issue, be it ammonia or something else?

Also, just a quick FYI, I'm doing this slightly different. I bought TONS of supplements in bulk when I was doing the Culter protocol a year ago, which I since discontinued because its very demanding and I just wasn't recovering at all after my sessions. ONe of the supplements I got was Advaclear by Metagenics (who do Folapro and Actifolate), which I used as a detox support supplement while on the Cutler protocol. It contains 134 mg L-5-methyltetrahyrofolate per capsule as well as a lot of the substances in the Yasko multi and in comparable amounts (NAC, milk thistle, choline, taurine, molybdenum, plus a lot of the detox-supporting vitamins and minerals all found in the yasko multi, which I've given up on because of really bad customer service experiences with Holistic Heal -this was 2 years ago so maybe they've improved). My version of the protocol below:

- 1 capsule Advaclear (containing 134mg 5-MTHF - I plan to use up the last of this and then replace it with 1/4 tab ActiFolate)
- 1/4 tablet Folapro (did 1/8th for first 4 days)
- 1 capsule Vitamin Discount Center PS Complex
- 1 Perque subligual
- 1 New Chapter Men's Mutli (1/3rd of a daily dose - contains only 133mg folate and no iron)

Thanks to all of you guys for putting your experiences on here! I'm not willing to just jump in to different protocols now, but there was so much good info here I finally felt comfortable moving forward with this.

Senior Member

Looks to me as though you have a pretty good protocol. I'm glad to hear of your progress, and you are certainly welcome for anything I have been able to do that is helpful.

I doubt if ammonia is causing the symptoms of constipation, sleep problems and anxiety. The latter two are more likely due to excitotoxicity. Quite a few people have reported these symptoms on the methylation treatments, and some have found that they became worse at first. Over time, they seem to improve, but it can take some time. If you want to know how things went for the people in our clinical study, see the "Results" section of this poster paper: http://www.aboutmecfs.org/Trt/TrtMethylStudy09.pdf

I've suggested that an increase in excitotoxicity may occur at the beginning of this treatment because glutathione may actually become more depleted at first, owing to diversion of homocysteine back to methionine, rather than flowing down the transsulfuration pathway toward glutathione synthesis. Lowering glutathione would likely have the effect of hindering the recycle of glutamate to glutamine by the astrocytes in the brain, and that could cause the excitotoxicity. I've suggested that people try adding a liposomal form of glutathione to counter this hypothesized drop, but I don't know if this will work, since I haven't heard from anyone who has tried it. Dr. Yasko has suggested a list of supplements that may help to calm excitotoxicity, which includes GABA, theanine, magnesium, taurine, Valerian root, progesterone cream, and others, and has also emphasized avoiding foods that are high in glutamate or aspartate, especially MSG, Nutrasweet, and hydrolyzed vegetable protein.

The constipation probably has a different cause. I note that you are already taking 400 mg of magnesium per day as magnesium taurate. You might consider increasing your magnesium intake, perhaps adding a form that is not well absorbed, like Milk of Magnesia. Raising intake of indigestible vegetable fiber may help, also.

Senior Member

Have you every looked at Martin Pall's Protocol re: methylation? I think that in addition to the Nutricology supplements, he has suggested additional B-12 (sublingual or liposomal), hydroxo for preference.

If it's a reasonably good start toward a methylation block treatment, do you think it would be important to add phosphatidyl serine?

I wonder if those of us who have benefited from the Pall protocol are seeing (in addition to a correction of NO/ONOO cycle biochemistry) a clearing of a methylation block. Is this possible, or am I completely out in left field?

Senior Member

Have you every looked at Martin Pall's Protocol re: methylation? I think that in addition to the Nutricology supplements, he has suggested additional B-12 (sublingual or liposomal), hydroxo for preference.

If it's a reasonably good start toward a methylation block treatment, do you think it would be important to add phosphatidyl serine?

I wonder if those of us who have benefited from the Pall protocol are seeing (in addition to a correction of NO/ONOO cycle biochemistry) a clearing of a methylation block. Is this possible, or am I completely out in left field?

Marty Pall and I go back a long way! We have had lots of stimulating discussions, and I have learned a lot from him. We continue to disagree on what the main aspect of the pathogenesis of ME/CFS is, but we are dealing with much of the same part of the metabolism. Marty's current focus seems to be on tetrahydrobiopterin. He believes that the main roles of hydroxocobalamin and L5-methyl tetrahydrofolate in the treatment of ME/CFS are to counter nitric oxide and peroxynitrite, respectively, while I believe that their main role is to support methionine synthase. Marty is modifying his protocol to raise the dosage of the former and give it liposomally, and add the latter, and I expect that after he does that, there will be a big improvement in the response to his protocol. If so, I believe it will result from lifting the partial methylation cycle block. However, I expect that his interpretation will be different! -) That's what makes the scientific world go 'round!

Thanks Rich! I actually went Gluten Free/Casein Free my first time around. Don't know why I didn't recall the excitotoxin issue this time around. But I will watch my diet and I actually have some taurine, valerian root and progesterone cream in the house so I will add them in.

Senior Member

Marty Pall and I go back a long way! We have had lots of stimulating discussions, and I have learned a lot from him. We continue to disagree on what the main aspect of the pathogenesis of ME/CFS is, but we are dealing with much of the same part of the metabolism. Marty's current focus seems to be on tetrahydrobiopterin. He believes that the main roles of hydroxocobalamin and L5-methyl tetrahydrofolate in the treatment of ME/CFS are to counter nitric oxide and peroxynitrite, respectively, while I believe that their main role is to support methionine synthase. Marty is modifying his protocol to raise the dosage of the former and give it liposomally, and add the latter, and I expect that after he does that, there will be a big improvement in the response to his protocol. If so, I believe it will result from lifting the partial methylation cycle block. However, I expect that his interpretation will be different! -) That's what makes the scientific world go 'round!

I'll have to read up more on methylation protocols to see if I can squeeze out some more improvements with it. At the moment my daughter and I are fighting an HHV-6 infection with Valcyte, and while I think it is responsible for a large part of our symptoms, I doubt it's the whole picture. Maybe a partial methylation blocks is still a problem we need to deal with.

Senior Member

I'll have to read up more on methylation protocols to see if I can squeeze out some more improvements with it. At the moment my daughter and I are fighting an HHV-6 infection with Valcyte, and while I think it is responsible for a large part of our symptoms, I doubt it's the whole picture. Maybe a partial methylation blocks is still a problem we need to deal with.

It is absolutely unnecessary to squeeze yet. Instead you can supercharge. While there are no guarantees, you might find the Active b12 protocol to 5 or 10 or 100 or 1000 times more effective than a hydroxycbl based protocol. There is also a method of detecting if you have a CNS/CSF deficiency as do many with CFS/FMS as shown by studies. Then there is also a method for addressing that too, which just does not appear to happen with hydroxycbl.

I think it is responsible for a large part of our symptoms, I doubt it's the whole picture.

The pathway for squeezing more results with the active b12 protocol is mapped out step by step. Some people find the startup to be kind of overwhelming because it starts up so many more things than hydroxycbl can touch. Mb12/adb12 in the right amounts work on 200+ more symptoms than hydroxycbl.